A blog about raising kids on the spectrum, working with kids on the spectrum, friends on the spectrum. And lots more.

Search This Blog

Wednesday, March 30, 2011

Return of the Fear.

Harri had been going along very nicely for the last couple of weeks. I was feeling proud of his
accomplishments, his obvious progress thanks to the ABA, and starting to feel on top of things. Then this week emerged a spike of non compliance which took the wind right out of my sails. I understand this is probably a normal fluctuation as he is only two and boundary pushing is to be expected, but this apparently overnight turnaround is accompanied by some more Autistic behaviours adding to his currently modest repertoire. When new Autisitc traits emerge I am once again filled with the anxiety I felt when he recieved the intial diagnosis. A sense of foreboding. It is the unknown that is so frightening. I am once again reminded that we are yet to see the full presentation of Harri's Autism. This strips me of the comforting narratives I build to ease my concerns. Having to create affrimations that accept the new territory we are entering. Then overiding emotion is a simmering anxiety, that would manifest as fear if not for the optimism it has to overcome. I have read so many uplifing stories of late, some of which I posted here, that have bolstered my belief in my sons ability to not only manage his Autsim but hopefully use it to his advantage. His 'unstrange' mind does offer gifts and skills not common to the every day kid. I hope to assist him to harness these. But I am aware that this can only happen if we can get through this non compliance phase. Back to the place where he enjoyed the positive reinforcers rather than the negative.

The second place runner in the emotions category is of course guilt. Have I allowed this apparent regression to occur by not being vigilant enough? Has the coming and going from one appointment to another discombobulated him? Have I undone all the hard work by his therapist by not following through on his program as strictly as I should? Not enough time at table top sessions to enforce compliance? I don't know, and that's part of the problem.The sense of floundering, of not being able to always understand Harri's motivation. Not being sure when you are positively reinforcing negative behaviors. Parenting these kids is a whole lot complicated. Trying to anticipate or interpret what is pushing their buttons is never ending, and shifting. It's a constant guesssing game. Is this stimming, or attenttion seeking, or a need for control, or natural curiosity? What do I respond to, and how, what do I ignore?

I expect these cycles of two steps forward one step back is natural. I hope soon I can embrace this as a natural part of his learning without the emotional baggage that accompanies it.

9 comments:

One of the hardest things about parenting a child with autism is the constant analyzing of every behavior. It's like I'm seeking out that fear you write about.I notice my daughter acts more autistic when she is getting sick. Sometimes it takes a few days for the cold symptoms to show up. You are doing a great job. Try not to beat yourself up. One of the great things about ABA is all the data they take. In a few weeks (or even better months) you will be able to see patterns of progress.

We didn't go the ABA route. In fact I didn't hear of ABA in the early days, We just drilled and therapised, programme followed, made him learn by repetitive means and followed our guts.

If you had seen him at three, you'd have noticed how truly different he was. If you had talked to me in the dark depths of various bad times over the years, you'd have heard words similar to yours here.

All I can say is that he is now 13.

And incredible. He is happy, confident and so comfortable in his skin. He has decided his new role is to mentor those younger on the spectrum, to give hope.

I don't know if you read my piece on Autism Sucks, but it is on one of my blogs too:

http://theinnerechoes.blogspot.com/2009/11/life-with-autism.html

Also on that blog is a later post, it is a narrative my oldest wrote last year for an assignment.

Seriously, if you could have seen him when young, and then know him now, the difference is unbelievable.

I guess I am trying to say it will get better. You have to believe it even in the blackest of hours.xx

I'm right there with you. Things seem to plateau and then seemingly without reason there is a period of regression or new sympotms (for lack of a better term) emerge.

I found when Alex is stressed he develops new tics or I see an increase of old behaviors. Problem is, he can't identify stress so I have to sniff out the problem. The only thing I know to do is to let him eat brownies (his total comfort food) and let him have more time with his 'go to' things--that tends to calm him.

For us I've found his behaviors are a mix of anxiety, fear and he stimms to calm. I let him be unless he's really trying to get me going.

Trust me here - it's nothing you did or didn't do. As much as I've always wanted it and even now find myself searching for it, there is no smooth upward road of progress. There are bumps and setbacks no matter what you do. I've spent years going back and forth over things every time we hit one of those "phases" trying to figure out where we failed. But we didn't fail. It's just part of the process.

My kid is genuinely amazing and has made unbelievable progress. He does so well, in fact, that I get blind-sided when he sometimes slips into behaviors or mindsets that used to be ongoing issues, because I suddenly realize that for the most part they aren't there anymore. That's when I realize how far he's come.

But growing and developing is hard, and it's even harder for these kids. Working through things is stressful, and that stress can manifest in all sorts of ways. My oldest used to throw things at people and try to run away from school. Then we moved on to yelling, then swearing. He regularly refused to do assignments at school.

The swearing is still there - he is a teenager, after all :) - but the angry bursts of it are much fewer and farther between and really only come out when he's home and feeling safe to express himself. At school he's rarely out of line. When he's having difficulty, he often asks appropriately for help. The teacher consultant lets him eat lunch in her office every day and thinks he's very pleasant company.

It hasn't been very pretty getting to this point. We've made plenty of mistakes and will no doubt make more in the future. It still gets better. Your kid won't stop making progress because you aren't perfect. Life is hard enough. Don't make it harder on yourself.

Thanks Diane and Lizbeth, your kind words mean so much right now. I feel very thankful that this blogging medium has afforded me contact with parents who are so much further down the path than I, and thereby have so much more wisdom to share.And Diane you are so correct that life is hard enough. Why do or think anything to make it more so.

I just stumbled onto your blog and wanted to add a comment... I was like you the first year after diagnosis; examining every peak and valley to death and trying to figure out how I could control it all. It's exhausting. We do everything we can to help our children; routine, therapies, diet, etc., but we are still not in control. Progress and regressions are simply a part of the deal. My daughter is age six and has only recently become extremely ritualistic; she never was before. I wondered, why now? There is no answer. I've had to learn that I'm more along for the ride than anything else. I celebrate the successes and hang on tight during the rough times and regressions, but no longer agonize over whether it was something I could have helped control or not. That answer is not. Definitely try to let go of that anxiety and just enjoy your child.